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I was still breathing.
I knew that, because I had checked…more than once.
It felt as though the oxygen had, somehow, been sucked from the room. My heart was alternating between skipping beats and then pounding as if I had just run a marathon. I felt an urgent need to get outside, into the fresh air, but I had barely enough energy to lift my head off the sofa pillow. I was freezing, even though it was the middle of July.
I watched, in horror, as my legs shook uncontrollably. The tremors, which had begun moments earlier, were increasing in intensity. My hands and arms began to shake, as I labored to pull myself up off the couch. Gasping breaths drew deeply in, bringing no relief. I could barely remember how to speak, let alone utter the words, “Get me….E.R.”
My brain was on fire!
As my husband frantically drove, I felt myself going. Away. It was all I could do to ‘will’ myself to stay. The hospital was 40 minutes away, and I didn’t know if I could hang on that long.
One more breath.
Then another.
I’m not sure how I got inside, where the admissions clerk was asking questions…simple questions which seemed grossly complex. My legs and arms were twitching, like the static electrical sounds of a short circuit. The room spun, as waves of nausea crashed over my pounding head.
“Sign here, please”.
I felt a strange, disconnected sense of watching from afar, as an unfamiliar signature, which resembled the scribbling of a two-year old child, trailed off the form. A wheelchair appeared and I collapsed into it, closing my eyes, wondering if they would ever open again.
“Please”, I whispered, “hurry”.
A bed. Questions. Warmed blankets. Prodding. Poking. More questions. Needles. Wires. Beeps. Lights. And finally an IV, which ultimately brought warmth and quieted the storm.
I was severely dehydrated, my sodium level dangerously low, so I was admitted for observation and further testing. The next day, I returned home with instructions regarding electrolyte imbalance, along with a large hospital bill…but no real answers.
That was the first of many such trips to the Emergency Room. It marked the beginning of a long, confusing, often terrifying journey into a very dark valley. My journey through the valley was fraught with difficulty, marked by road blocks and detours. Because of the extreme cognitive dysfunction (a neurological effect caused by the root of my trouble), I was forced to grope my way, through that valley, under a thick mental fog.
Navigating a complicated, misunderstood, chronic illness, with mental clarity, would have been challenging enough, let alone trying to find my way through, with impaired brain function. In retrospect, I can clearly see divine Guidance, which was ever present. And even in the midst of the darkest portions of the valley, I sensed that I was being directed by something much bigger and more capable than myself!
Just a few short months prior to that first visit to the ER, I had begun to write a song. The name of the song was “There’s a Storm Coming”. The lyrics told the story of a threatening storm, which was looming in the distance.
“There’s a storm coming… after me!” was a line in the refrain. The second verse questioned my response. Would I cower and hide?
Or would I rise up, shake my fist, and look the storm in the eye?
The song was never finished. Perhaps, because I was unsure of what my answer would be.
Now, I know.
Over the next couple of years, I bounced from one specialist to another, who had little to offer in the way of an explanation or any help. I felt that I was hanging on by a thread, with no real answers or hope for better days ahead.
Desperation drove me to the internet to try to find the solution. I kept thinking about the one elevated thyroid test, during my first visit to the ER. Even though it was not elevated for long, some of my symptoms seemed to be in line with low thyroid function. My doctor had ordered the normal thyroid tests, throughout the weeks following that hospital stay, but they always came back as “normal”. Still… a niggling feeling told me that I should continue down that pathway of investigation. My research kept leading me to information regarding an autoimmune disease of the thyroid, called Hashimoto’s Thyroiditis. I persuaded my doctor to order the test, which revealed that, indeed, I did have Hashimoto’s Thyroiditis. It didn’t explain everything, but at least it was a direction.
A referral was immediately sent to “the best endocrinologist in the area”, however, even with my doctor’s referral, there was a three-month waiting list for an appointment. I wasn’t sure I could make it three months.
That appointment brought more tests, a biopsy of my thyroid, and a final declaration that things would just get worse from here. That I would eventually, at the very least, be on thyroid replacement for the rest of my life -or worse. I walked out of that office, and
I rose up, shook my fist, and looked the storm in the eye!
In that moment, I decided that would not accept that prognosis. I would find wellness, even if it meant going down a non-traditional path. And that was that!
The internet research began in earnest. I was very sick. And unsure. But I felt a calm wash over me. Somewhere, deep inside, there was a ‘knowing’ that it would probably take a mighty effort to find the answers that I needed, but I would find them!
Days and weeks of intense research led me to functional medicine strategies for general wellness, which I began implementing right away. Slowly, but surely, I made some forward progress. The “spells” became fewer and farther between, but I was by no means “cured”. So, the research continued.
Open a door.
Door closed.
Open another. Little by little, I began to see the gift in the closed doors.
Closed doors freed me to find the right doors to step through.
Nuggets of information continued to be placed in front of me. I tried to remain alert to the guideposts, which I felt inner Wisdom was offering. I was led to a functional medicine doctor, who had started his own wellness clinic after spending several years at the Mayo Institute. I will be forever grateful for his help in uncovering the root cause of my health crisis so that I could finally move toward total recovery.
My health issues were rooted in bio-toxin illness, from toxic mold exposure. A genetic predisposition had set my body up for developing CIRS (Chronic Inflammatory Response Syndrome), after exposure to toxic mold.
That news opened wide the doors for healing -and- it also closed nearly every door to the life that I had always known. You can read about it here. The discovery of the root cause was an amazing gift. But with it came the new on-going challenge of how to reinvent my life!
I have been on the upward journey, out of the valley, since Jan 2016. It has been a long, hard climb. But today I am standing on the precipice, which overlooks the shadows of that time. My brain is no longer on fire, and now I am ready to share what I have learned with other valley-walkers, who desperately need to find their own illusive answers.
If there is one piece of advice that I could offer to someone, who is struggling with a complex chronic illness, it would be this:
Never give up!
The next door that you open may be the one that you can finally step through.
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If you struggle with a long list of chronic symptoms, it might serve you to research the possibility of toxic mold exposure or bio-toxin illness. Sick buildings are prevalent, and there are many people who are unaware that they are being seriously impacted by exposure to those toxic environments.
Avoiding water damaged buildings (and other bio-toxic environments) has been central to my healing. After practicing mold avoidance, my Hashimoto’s Thyroditis (autoimmune thyroid disease) went into remission, my symptoms of CFS (chronic fatigue syndrome) went away, and my sensitivities from MCS (multiple chemical sensitivity) were greatly reduced. I still practice mold and chemical avoidance, which is challenging but necessary, for my the sake of my health.
Below, you will find resources which have proven helpful for me. You might also find them helpful for broadening your own understanding, in order to assess whether it might be a path of investigation to pursue with a qualified health professional. We are all individuals, with different pathways toward healing. Your answers may or may not be the same as mine. This article by Dr. Jill Carnahan (a top-notch functional medicine doctor) might be helpful to get you started, as you begin your own research.
Here are some sites that were/are helpful to me:
Dave Asprey (Bulletproof) writes a blog that is extremely helpful. He shares wisdom regarding a holistic approach for general good health, and I highly recommend his site! Links to his blog site and Facebook page are:
https://www.facebook.com/bulletproofexecutive/
Dr. Ritchie Shoemaker’s site is an excellent resource for gaining a deeper understanding of bio-toxin illness and CIRS. The link to his website is:
Other helpful resources:
https://www.jillcarnahan.com/exposed-to-mold-now-what/
https://www.goodreads.com/book/show/23602502-tox-sick
http://www.blackhillspicturebooks.com/multiple-chemical-sensitivity/
There are a multitude of Facebook pages, which are also chock-full of information regarding bio-toxin illness and how to avoid exposure. Here are a few that have been helpful to me:
https://www.facebook.com/groups/467907716878240/
https://www.facebook.com/groups/moldavoiders/
https://www.facebook.com/groups/toxicmoldcirssupport/
https://www.facebook.com/groups/erikjohnsoneffect/
